A.S. Face 0111: Alan Beaulieu

My name is Alan Beaulieu.  I am 29 years old and was just recently, within the past few months, diagnosed with Ankylosing Spondylitis (AS).   My story begins like so many others that suffer from this disease.  It involves pain, stiffness, fatigue, frustration and feeling hopeless.  AS is a complicated disease, there are not a lot of “specialists” that have a lot of answers; without answers there are not a lot of options for relief.  However, we must not just give up.  Even though we have our daily struggles and pain, we must not give in to it.  We must do whatever is in our power to face this disease and defeat it.  I hope in writing my story I can get a lot of my own questions answered, as well as, maybe help those that are unsure of what AS is and what it does to the bodies of those of us that suffer from it.

Background:  I joined the United States Air Force in March 2001 and became a part of the Security Forces career field.  For the first six years I was a regular “Air Force Cop” The last four years, I was fortunate enough to be able to be a Military Working Dog Handler.  I have worked both drug and bomb detector dogs.  It was the best job that I have ever had.  During my time, I have been stationed at Ellsworth AFB, South Dakota, Ramstein AB, Germany and currently at Joint Base Mcguire-Dix-Lakehurst, New Jersey.  During the last ten years I have been deployed 4 times, twice to Iraq.  I have enjoyed my time in the military.  Unfortunately, it is coming to an end.  I am being medically retired due to having AS, 6 bulging/herniated discs, moderate Traumatic Brain Injury and PTSD.  I look forward to “hanging up the boots” and re-starting my life back at home in Michigan.

The Pain and The Journey:  My story of AS starts in spring of 2006.  I had just returned from a 7 month deployment to Kirkuk, Iraq.  During my deployment I noticed some back stiffness but really didn’t think anything of it.  I figured it was just from all the gear and ammunition, little did I know, I was in for one rude awakening.  One morning, while on R&R, I woke up out of bed.  When I went to take a step I feel to the floor.  I had no idea what was going on.  I felt terrible pain in the lower part of my back,  along the spine and debilitating pain on the lower left side and down the left leg.  My entire lower back and left leg felt “seized up”  It felt like it was fused together.  Each step was painful, each movement that involved the left leg or back was excruciating painful.  I limped slowly for the next few months.  No one really had a clue as to what was going on.  When I went to the medical clinic on base the doctors thought my hips were uneven.  They layed me down on the table and my left leg was yanked on twice in an attempt to even out the hips.  Obviously, this made my pain worse.  After several failed chiropractic visits,  I was sent for an MRI.  The results showed a bulging disc in the L4-L5 area of the spine.  After receiving the results of the MRI, I was sent to physical therapy.
Physical therapy was a waste of time. I rolled around the floor on a ball and did a bunch of stretches.  The point was to keep my back straight and my core muscles strong.  They said it would help with the pain.  Notice, I previously said, it was a waste of time.  It didn’t do anything for the pain.  It took months, upon months to start running again.  After a few months, it got easier to walk.  The easier it got to walk the easier it got to job ever so slightly.  When I finally tried running it was horrible.  As soon as I got a few steps my entire lower back and left side would tighten up and eventually seize.  My left leg would go numb and feel like “jello” The more I tried to run through it the worse it seized up before eventually I would hobble around.  I was baffled.  I had no idea what was wrong.  All the medical doctors would do is feed me motrin or naproxen.  They couldn’t understand why I was in so much pain.
I wasn’t able to run until the summer time of 2007. Even then it wasn’t like what I was used to.  I was still slow.  I was still barely passing my physical training tests.  Sit ups and running were painful.    As much as I wanted to say something, the mentality in the military is to “press on.” You don’t show weakness.  If you’re hurt then you better suck it up and keep going.  For the next year, all I did was take naproxen for the pain and do my best on my PT tests.  It got so bad; I had to take 6-8 naproxen just to keep the inflammation down so I could pass my tests.
In August 2008, I was deployed to Baghdad, Iraq.  My bomb sniffing dog, “Cici” went with me.  I was really worried that my back would give out on me during the deployment. I had to do whatever I could to keep my dog and I, in the mission.  I went to the medical tent several times for the back pain.  I spent many nights laying on heating pads and taking NSAIDs and motrin like crazy.  At this point, I have been dealing with this pain along the lower back and left leg for 2 years now.  With no understanding of what the problem is.  No one knew what was going on.
My problem took a turn for the worst in the fall 2010.  The pain was getting more frequent and worse.  The exacerbating episodes lasted longer and longer.  Before, I would hurt for a few months then it would return to normal.  This time it never went away.   This time was like all the others, except it never left.   I was never ever to stabilize my back again.  For 4 years I felt pain.  It would be extremely painful when getting out of bed, off the couch or even off the floor.  It felt as if my back and leg area was fused shut and every movement was forcing it “open again” There were times I would be in tears from the pain.  There were times I had to use a cane just to help me walk.  It was horrible.   In November, 2010 I underwent another round of MRIs.  This time they found bulging/herniated discs in my C-spine (3) and L-Spine (3)   the doctors were still at a loss as to the pain in the lower left part of my back and down my left leg. In Jan 2011, I was sent to physical therapy (yet again) for the fourth time.  Again, it was a waste of time.  I couldn’t run, nor could I walk more than a hundred yards without pain in my back and down the left leg.  In Feb 2011, the physical therapist told me there was nothing more that could be done for me.  She said, “Since your still having the pain and the numbness when you walk or try to run” this is more than just something that I can fix.
I spent the next few months going to two neurologists and pain management.  Both neurologists confirmed I had Degenerative Disc Disease.  Pain management really didn’t do anything for me.  Upon the initial examination the doctor noticed when I sat down; I didn’t have the strength to lift my left leg off of the ground.  It was crazy, It felt like I was paralyzed and had lost all strength and functioning in my left leg.  I was prescribed a whole slew of narcotics and pain medications during these months.  None of them provided relief.  I underwent an EMG test and the results were “normal.”  I was growing more and more frustrated.  I was in so much pain and no one had a clue as to what was going on.
My frustration reached its peak in the spring of 2011.  I was in the office of my former Primary Care Manager.  After all the visits to the specialist he was growing more and more suspicious that I was faking it.  He sent me for a round of blood tests.  About a week later, I was called back in. He looked at my tests and said, “You know I was real skeptical about your pain when you first started coming in.  However, according to your blood tests you have some real issues going on.”   I wanted to scream at him. I wanted to smack him for basically telling me I was lying. However, I could not.  After all, he is a Captain and I was just a Staff Sergeant.  I asked to go to a Rheumatologist.   I pleaded by saying, “there is something wrong and we haven’t tried everything.  What about a rheumatologist?” My request was shut down.  I was instead sent to mental health for a psychological evaluation.  He seriously thought all my pain was just “in my head”  I was at a loss.  I started to feel like I was going crazy.  I began to think, “am I just making this up?”  I knew I wasn’t, but after 5 years, no one had a clue as to what was going on.”  To make matter worse I was also told, “you can no longer work with military working dogs”  The physicality of the job is too much for your health.  I was devastated.  I had been working with bomb/drug dogs for 4 years.  I deployed with a bomb dog who saved mine and others lives.  I was in tears.  It hurt badly.  I was moved to an office job, where I am currently working as I await the results of my medical retirement board.
(on a side note: It is a good thing I was sent for the mental evaluation. I was having problems from my time downrange for a while.  It was then I was finally able to be diagnosed with PTSD and mTBI, so all was not lost in getting sent to mental health.   There is a stigma in the military about PTSD.  Those of us that suffer it are seen as weak.  When I was taken off of the road and away from dogs, it allowed me to quietly get help without fear of being judged and tormented.  It’s not my fault I saw what I saw and experienced what I experienced.  To be judged and viewed as weak by my own brethren was painful.)

When I went to mental health, the LCSW that was working with me noticed my pain.  She noticed i walked with a limp daily.  She noticed I couldn’t sit in a chair for more than 10 minutes without grimacing and having to stand up due to the pain. She asked me what was wrong.  I told her the whole story.  She looked at my blood tests and made a few phone calls.  I was then able to switch to a different Primary Care Manager.  Finally, after 5 years, I had a doctor who gave a damn.  She immediately sent me to a rheumatologist.  The rheumatologist sent me for more blood work and a bone scan.  The blood work showed high levels of C-reactive proteins and I tested positive for HLA-B27.  The bone scan showed high levels of inflammation a long my lower back and in my SI Joints (sacroillitis)  The bone scan was unable to show inflammation in the neck.  I wasn’t able to sit in the machine that long.  I freaked out in MRI and bone scan machines due to my PTSD.  If I feel trapped with nowhere to go, I immediately fear for my life and undergo a panic attack. After listening to my symptoms the rheumatologist finally diagnosed me.  It was ANKYLOSING SPONDYLITIS.  Now, normally people would be devastated upon hearing they have a lifelong debilitating disease.  I was actually relieved.  I was so relieved because I knew I wasn’t crazy.  I knew I wasn’t faking it.  It’s pretty hard to fake 5 years of back pain.
Currently, I am on Humira.  I inject myself every two weeks.  I think I need to go to weekly injections.  For the first couple of days I feel okay.  I don’t have the inflammation in the SI joints and the pain in the left leg. However, my neck is still stiff and my lower back (along the spine) still hurts.  If I try to do any type of physical activity the pain in the neck, back and even the sciatica gets worse.  The only time I feel okay is when I don’t do anything at all.  After a few days, the pain starts coming back on its own.  It’s frustrating.  I fear getting bamboo spine.   Over the last few weeks I have been getting a pain in my chest and I have had shortness of breath for a while now.   I see the rheumy on the 17th.  I am worried the spondylitis has attached to the joints in my rib cage.  If this is indeed true that means my chest is seizing up and my lungs can’t expand like a normal person.  I am 29 years old.  I can’t lift more than 29 lbs, I can’t sit for too long without being in pain.  I can’t bend over very much, nor can I bend to the side.  I can’t turn my neck too much without being in pain. I am on an immune suppressant which leaves me tired all the time.  When I tell people what I have I get the same response, “what is that?”  It’s frustrating.  It’s frustrating to have a disease that impacts my life so severely, yet no one has a clue what it is.
Even though I get frustrated, I am focused.  I won’t let this disease beat me.  I am confident they will find a cure.  I have read numerous articles and even read about how this disease could be caused by bacteria.  Who knows?   All I know is this disease is real. It has the potential to be extremely debilitating.  However, I can’t focus on that. Each day I try to stretch as much as I can. I try to stay active.  It is difficult because I am limited but I do what I can.  I am looking at the disease like a blessing in disguise. Instead of doing 20 years in the military I am able to get medically retired.  I will be able to move back to Michigan and achieve my life long dream of graduating from the University of Michigan.  I also have the assistance of a great service dog named Bella.  She’s a service dog trained to the specification of the American with Disabilities Act.  She is trained to assist me not only with PTSD symptoms but also to “fetch” things off of the ground so I don’t have to bend over at pick it up.  She is a lifesaver.  Once, I get medically retired, I will be able to re-start my life.  I understand what I have. Now I just have to find what I call, a new “normal” I have to learn to live within it and also figure a way to defeat it.

I am Alan Beaulieu and I have Ankylosing Spondylitis!

Joint Base McGuire-Dix-Lakehurst, New Jersey United States of America


13 Responses to “A.S. Face 0111: Alan Beaulieu”

  1. How perfect … # 111 on 11-11-11. And, even better, a vet on Vetwrabs Day!! Thank you for your service to our country …

  2. Absolutely Positively Motivational for me! A Vet (with a dog vet too makes it even better for me) I have had AS since 2000 been diagnosed 8 yrs ago, just recently found A.S.A.P. on Facebook and now the faces of A.S.

    Awesome!

    Thank you for all you do, Alan, for all of us fellow Americans, and especially those of us who have AS you are showing us that we can do it too!

    ~Mary, Washington (the state)

  3. Yes, thank you for your service.

  4. I, too, am 29 years old and was just recently (meaning, this past Wednesday) officially diagnosed with AS, although it was suspected since May 2011. I can totally relate to your feeling of relief after being diagnosed. Naturally, we’d rather be normal 29-year olds with good health, but it is like a weight off of your shoulders to be told you have a real disease and it’s not in your head.

    I hope things continue to improve for you, now that you have started treatment. Thank you for serving our country!

  5. Dear Alan,
    Thank you for sharing your story with us. I am a person who is always looking for a “sign” to know that I am moving in the right direction. I had just posted that I needed a “face” because I had not received any for the day. I am finding that I “pout” if I think I am not going to get a “face” for the day. I have received one every single day since I started this journey. A few have asked me why I would take on a project that would consume so much of my time and energy. I wonder sometimes myself. After posting, I received your email. I was so excited to see that I would indeed have a “face” for the day!
    I was shocked that you were a veteran and so tickled, then I was totally in shock when I realized you would end up being A.S. Face 0111.
    My 1st story on the 11Th Verterans Day was a veteran who would be :face” 0111.
    1 /11/111/ Equals my sign!
    Sincerely Cookie
    Thank you for the sacrifice you and your family has made in order that I may have the freedom to do this site safely in my home.
    Bless you always.

  6. Dear Alan,
    Thank you for sharing the story in Veteran day, you will get better. TNF-alpha blocker drug (Remicade. Humira) works better on AS patient with obvious inflammation marker (C-reactive protein) and bio maker (HLA_B27), hope you will be regularly tested by your rheumy for C-reactive proteins and ESR.

  7. Dear Alan,
    You are an incredible young man with a very heartfelt story. I can very much relate to your experience in seeing a chiropractor and going to physical therapy (it indeed is a waste for AS patients). I’ve had back issues since I was in junior high and had always seen a chiropractor. He also thought my hips were out of line (and they probably were due to all of the inflammatory fluids in the joints) and decided to put them back. I could hardly make it to my car after the appointment. That started my first bad flair of the AS. I went to 3 physical therapists and my Primary Care Physician (PCP). It was my sophomore year of college and I was walking to class with a cane. My mother bought me a bright pink and green one. She said Megan, “People are going to notice you limping, so you might as well give them something to stare at.” She has quite the sense of humor. There were days when I thought I was crazy, too that maybe it was just some strange depression. Some days the pain was not so bad and sometimes I had to call a friend to help me get out of bed to go to class.

    I was really lucky, though because I studied Biology. I knew I didn’t have a pulled muscle like the physical therapists said. It was a different kind of pain, and they just weren’t really listening. I pushed to see a specialist. I went to an orthopedic doctor, thinking that maybe I had a minor fracture from running or dancing. Low and behold the HLA-B27 gene popped up, and I’ve been seeing a rheumatologist since.

    Unfortunately AS is a disease that is widely unknown by those outside of its field and its characteristic symptoms are shared by so many other ailments that it is hard to diagnose without actually seeing spinal fusion or testing for the gene. I am very sorry to hear that you had many years of enduring such pain without someone in medicine listening to you. I can tell you that they weren’t originally trained to be so cruel. I am now in medical school. It has been a long hard road, but I am doing my best to share my experience with peers and professors that some patients do lie about pain and some do not and that much care must be taken to not dismiss someone who is not lying about their symptoms. We as medical professionals must care–we should care. I have learned that doctors are fallible as are all humans. I have had good rheumatologists and bad ones and have learned that it is my responsibility as a patient to find the good ones and my responsibility.

    I hope that you will find rest and some pain free times at your home. For serving our country you deserve quite the accolades but for doing it with a disease that many find to be completely debilitating is absolutely extraordinary. A big thank you and a best of luck!

  8. Alan,

    Thank you for sharing your story. I especially related to the part about people not understanding what the disease is. It is so hard to explain how each day can be totally different than the day before. I am also on Humira and made the switch from every two weeks to once a week. It has helped a lot with the pain and inflammation in my lower back, and the swelling in my knees and ankles.

    Best of luck to you,

    Daryl

  9. Alan, Mary here again, I am also on Humira the bi-weekly regimen I initially signed on with my Dr saying i would do it for 3 months only, you see i had done Enbrel before and was so sick from it that i had to stop after only 9 weeks because it just wasn’t worth it to me my quality of life was in the toilet i was constantly nauseated and depressed the pain didn’t get better, the labs weren’t showing enough improvement and i only wanted to get in my truck and drive over a cliff. that was 3 years ago, I have been on Humira since June 15th and while i get nausea and feel generally “icky” for about 4 days the labs look good, so I am continuing, I have to see the Dr and I will ask about upping my dose, i was unaware that was a common practice. Your story has helped me a whole lot.

    I have a love for dogs and that is initially what made me comment on your “face”
    Question for you… Does your service dog “sense” when you are in extreme pain before you move or cry out? My dog that I have now and the one I had before I even was diagnosed did, Sasha was amazing I got her as a pup she was SO protective of me especially when i was having a “flare day” she would come up and lick my ears and curl her body around my back and hips where the most of my pain was- as if to offer her warmth to make me feel better.

    The healing power of dogs is amazing, just having them in my world makes every day – even the worst days worth living!

    Again, Alan Thank you for all you have done for our country and good luck in your treatments, please feel free to email me directly. i love your face at g mail
    Respectfully Yours,
    Mary

  10. Alan, I first wanted to read your story to find out how you were able to be in the military w/AS. My daughter wants to go into the military, but she has AS.
    I can identify with your predicament of being sent to therapy. My neurologist thought I was “drug seeking” & sent that info to my
    Pain mgmt Dr as well as the first Rheumatologist I saw. The frustration was overwhelming! Keep up the good fight & Thank you for your service to our country! God Bless You.

    • Allen,

      I am currently deployed in Afghanistan and did a double go round in Iraq 04-05 / 07-08.
      I was diagnosed with AS in 09 after the same pony show you went through. I beat a MEB, PEB and fit for duty before comming on this deployment to make sure my my guys didn’t have to go at it alone.
      I am fused from my hips to my neck and find it more and more of struggle to get out of the rack every morning. I have a great battle that ties my boots for me on the worse days.
      I just wanted to let you know I understand what’s it like to be in mental health and branded (crazy) because the medic told everyone the doc said your just trying to get a ride out or pad a disability.
      If you made it through rigorous physical demands of a deployment, then that atleat gives you something to draw on when the bad days come around.
      120th Engineer Battalion “never idle”

  11. Allen,
    I am currently deployed in Afghanistan and did a double go round in Iraq 04-05 / 07-08.
    I was diagnosed with AS in 09 after the same pony show you went through. I beat a MEB, PEB and fit for duty before comming on this deployment to make sure my my guys didn’t have to go at it alone.
    I am fused from my hips to my neck and find it more and more of struggle to get out of the rack every morning. I have a great battle that ties my boots for me on the worse days.
    I just wanted to let you know I understand what’s it like to be in mental health and branded (crazy) because the medic told everyone the doc said your just trying to get a ride out or pad a disability.
    If you made it through rigorous physical demands of a deployment, then that atleat gives you something to draw on when the bad days come around.
    120th Engineer Battalion “never idle”

  12. Alan…..thank you so much for your story
    and your service. You are braver than you realize!

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